Apr 14, 2017 Latest post:
Aug 16, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.
Robby was diagnosed on July 8, 2016 with a rare and aggressive soft tissue cancer called retroperitoneal dedifferentiated liposarcoma. It was originally misdiagnosed as a hernia and had already spread from the pelvic area to his left lung at the time of the official diagnosis. When Doc gave us the news that the lump was indeed cancer, he added "It's not a good one to have!". We've since learned that sarcomas in general are highly unpredictable and relentless, leading to high recurrence rates, and in the case of Robbys sub-type, they are notoriously difficult to treat as well.
Up to this point in his journey Robby has had two surgeries removing a grapefruit sized tumor in his abdomen, resection of his appendix and 10" of colon, removal of tumor in his pelvis and removal of a testicle. In the last 8 months he's spent 43 nights in the hospital, had 8 hours of SBRT/CyberKnife focused radiation on the lung (this was particularly difficult as you are put in a frame to keep you from moving and you have a clip on your nose and have to hold your breath for 30 seconds at a time with your arms held over your head for the entire two hour session), had 700 hours of toxic chemo (nicknamed "the red devil"), had 1 blood transfusion and countless scans and blood draws. Through all of this, he has not complained once and remains committed to fighting the beast and winning! And in true Robby form, when it would be so easy to turn inward, his thoughts and actions continue to be focused on helping others. He is indeed perfectly and beautifully made and he will always be my hero.
In reading Robby's Journey, please keep a few things in mind...
Liposarcoma is referred to as an "orphan cancer" because it is not high on the list of researchers priorities due to its rarity. Funding and research for these rare cancers are minimal, as compared to more prevalent types of cancer, thus limiting life-saving research and drug development. This often leads to a less favorable prognosis. Please help raise Sarcoma Awareness! See websites I have listed on this CaringBridge for more information and ways to support.
We appreciate your support and words of hope and encouragement. Thank you for visiting.